Sunday, April 2, 2017

It is hard for me to imagine that this week will be my baby girl's 40th birthday. Wasn't it just yesterday that she just a beautiful infant (see Birthday Girl)? Wasn't she just a very loud and energetic child? Wasn't she just a snarly teenager? Wasn't she just a proud college grad? Wasn't she just a blushing bride (see With This Ring)? Wasn't she just a terminal cancer patient (see Blowing Out Birthday Candles)?

Those memories, both amazing and horrific, are all that's left. My Jaime will not be here to celebrate this milestone or any others in the future because melanoma took her life when she was 29. Thanks to her love of tanning beds, she was diagnosed when she was 20 and only celebrated 9 more birthdays. And for many of those, she wore a brave mask to cover her pain. Melanoma has a nasty way of stealing birthdays!

I know that many of you have come to know my only daughter, my best friend, my hero, my courageous melanoma warrior Jaime through my stories on social media. However, in honor of her 40th birthday, I'd like to share a few of the
pieces that made up our Jaime.

Jaime was, in many ways, unique, seeming to live life at a faster pace than most, perhaps somehow knowing that her time here was limited. She was the ultimate free spirit. No one else could make me so angry or make me laugh so hard. She had a huge heart but wasn't all sweetness; there was plenty of spice mixed in. She definitely did her own thing and wasn't concerned about what others thought. She was outspoken, sometimes brutally outspoken. Either you adored her or you couldn't stand her -- there was no middle ground -- and she didn't really care. But if you were her friend, she would do anything for you!

She always wanted to be the center of attention and usually made sure that she was, much to her brothers' dismay. Jaime was that annoying child who always had to be first in line. She never met a stranger, and she could talk your ear off. But she always had that beautiful smile on her face and a contagious laugh. And she loved to sing and dance. For Jaime, life was one big party ... her show and she was the star!

As a toddler she looked like an angel with unruly strawberry blonde curls going everywhere, bright blue eyes, and freckles flowing over her nose and down her cheeks. But when that little angel opened her mouth, her vocabulary made your toes curl up and your eyes pop out. The "F" word was among her favorites ... and remained so throughout her entire life. I tried to clean up her potty mouth by washing her mouth out with soap, until one day she gave me a bubbly smile and declared that she was starting to like the taste of that!!

At the first parent/teacher conference of each school year, Jaime's teachers would tell us that we should be prepared for them to recommend holding her back to repeat the grade, but by the end of the year they couldn't wait to pass her along to the next group of unsuspecting teachers. The school psychologist assured us that Jaime would be a powerful leader as an adult ... but because of the damn cancer, all she could do as an adult was fight for her life!

I'm sure she was responsible for giving her teachers more than a little gray hair! She was the child who got bored and roamed around the school for hours, ending up in the nurse's office every day just to chat. It was impossible to know whether Jaime was a good student in elementary school because she never really took a test. She insisted on being the first student to finish a test so she just went through and marked a, b, c, d answers, without reading the questions. We weren't even sure she could read, but she did graduate from college with honors so I guess she had us all fooled!

To my knowledge, she never discriminated against anyone, having friends of all colors, faiths, cultures, and sexual orientations ... but she did not hesitate to judge people based on whether or not they were a$$holes (a word that took second place in her list of favorites!).

Every summer Jaime participated on the YMCA swim team, not because she was a great swimmer or was competitive in any way, but because she could hang out every day with friends of all ages. For her, it was a summer-long party, and swimming a lap now and then was just the price she was willing to pay. Jaime was also goalie on a soccer team, where she spent each game perfecting her cartwheels in front of the goal box. She was a social animal, not an athlete!

Then that little girl then became a feisty, independent, defiant, moody teenager with a wild streak, who declared war on her parents and any other authority figures! One night when she was out with friends, her phone butt-dialed us. We could hear her laughing and proclaiming that "I'm so drunk! And my parents don't even know that I drink!!" Giggle, giggle, giggle! Well, her parents did then, and they weren't laughing. That got her grounded for months.

That snarly teenager blossomed into a college student but not without some bribery. Her high school dean had destroyed her confidence by telling her she could never pass a college class. But after passing the first class with an A (with a lot of tutoring from Mom), she found her lost determination and continued to take and pass classes until graduating with honors.

Jaime was very orderly and organized (must have gotten that trait from her daddy) -- and a control freak. She planned and executed the magical wedding of her dreams without a single hitch, but I'm sure her vendors were dreaming about executing her before it was over!

Her career in fashion merchandising had its start and devastating finish at Fossil, with her being told to leave because of her melanoma
diagnosis. But I will save that story for a future blog dealing with cancer
patients and employment. She did, however, go on to create her hand-crafted jewelry business, which I now continue for her.

And that brings us to the Jaime you are more familiar with, the one who fought melanoma for 9 years with grit, determination, and her delightful sense of humor, never allowing the cancer to define her. She made me so proud of the fierce warrior she became ... and she never lost her love of life, her spunk and sparkle, or that beautiful smile.

When we were planning her headstone, I was told to think of a 6-word saying to include on it. When I asked her oldest brother Ben about it, he said without hesitation "She Gave the World the Finger." That is not the saying that we chose to live on her grave marker for eternity, but it was oh so fitting! Jaime definitely lived life her way ... and lived it well.

Sunday, March 12, 2017

Life has its ups and downs. You buy a new car and then have a fender bender; you graduate from college and then it seems like forever to get a job; you find the love of your life and then you discover that he/she is not your soulmate after all.But imagine that your life involved climbing up the slope of a steep cliff with someone you love more than life itself, some times dragging them and some times being dragged by them and some times carrying them on your back ... only to reach the top and step over the edge into a free fall, losing your grasp on your loved one along the way.That is kind of the way it feels to lose a child to cancer. And I've been in a free fall for the past 10 years.My daughter Jaime was 20 when we heard those terrifying 3 words "you have cancer." It was also the first time we had ever heard the word "melanoma." She had been diagnosed with melanoma, an often-fatal form of skin cancer, caused by her love of tanning beds since about age 14. But everyone said "she was too young for cancer" -- and "she didn't look like a cancer patient" -- and "it was just skin cancer, right?" WRONG!It's been 10 years this week since Jaime took her last breathe, and I feel I should have something important to share. I feel like I should have encouragement for those mothers who are also grieving but not as far down the road as I am. I feel like I should have some answers to all the questions that all of us angel moms ask. But I don't. I hate to tell you, but it does not get easier; it just gets different. The grieving continues, but you do get better at wearing your mask, the one you put on whenever you are not alone. The unimaginable pain is chronic, but you somehow get used to carrying it and it is not as raw or heavy.You will never be the same person you were before. Your life has been divided into your life with your son or daughter and your life after having them ripped from your arms. My "post-angel wings" life now is nothing like it was when Jaime was alive. As I said, I'm in free fall.Ten years has been an agonizingly long time to be without my child and best friend ... honestly, much longer than I ever hoped I would be separated from her ... and at the same time, it seems like it was just yesterday that she came through the front door yelling "Mom." Jaime was always the center of attention and I was her shadow. Now I am just a shadow looking for its missing object.That doesn't mean that my life has no meaning or direction. I still have a husband and 2 sons that I love with all my heart, but my direction has only come from a little voice whispering in my ear, giving me passion and commitment to fight the tanning beds that took my baby girl.One thing I have learned in the past 10 years is that life is not fair. Growing up, my mom always would tell me that because I was such a bleeding heart. But now that I'm here and Jaime is not, I do believe that my mom was right. It's really not fair -- not fair at all! And don't assume that because you have gone through the unthinkable, nothing else bad will happen. You think you have paid your dues, but life just keeps happening.Then there is the tremendous guilt. She was my child and I should have

been able to protect her. I should have been able to fix her. I've always been a fixer, but not this time. Why not this time? Then there was the guilt that I was not the same wife I had been before Jaime's death, and not the same mother. I realized how badly my family wanted me to be the same ... but that Donna was no longer here. She had died with Jaime. The guilt has been suffocating!For the first couple years I had a never-ending loop running in my head of all the events leading up to Jaime's death. All the second guessing; all the what ifs; all the searching for answers when I wasn't even sure what the questions were ... playing it over & over & over. I finally came to realize that no matter what I had done or hadn't done, the final result would be the same. And as weird as it sounds, I haven't worn a watch or carried a purse since the day Jaime died and I have no idea why that is. I've just learned to accept that not everything has an answer, at least not one I understand.At the beginning of my grief, I heard all the comments from people who mean well but just don't know what to say -- "she's in a better place," "it was God's plan," "at least she is free of pain," "I understand your pain because my grandmother died," etc. FYI: The best thing you can say to a grieving mom is "I'm sorry," "I love you," " He/she (and use their name!) will never be forgotten," or a story about the son or daughter, or even just a hug. It was 3 years before I could look at Jaime's photos. And then it was not because I wanted to but because I was forced to as part of the video presentation on tanning beds that I had agreed to do. It was so very painful to dig through all the pictures from a better time, a happy time, but I did so with a lot of tears. The nightmarish memories from Jaime's death were just beginning to let the happy memories of her life come forward.

Somewhere along the way, I learned to recognize the warning signs that I was sliding into that deep dark hole of extreme grief and despair (you angel moms all know the place I am talking about) and eventually gained the strength to not allow my mind to take me there. The climb out was extremely exhausting. If you haven't been there, it's not someplace you ever want to visit.It took me several years to feel comfortable about going out socially. Small talk scared the crap out of me. The question I feared most was the pleasant, simple "How many children do you have?" And if I got through that one without breaking down, there was usually the innocent follow-up "And where do they live?"
I was also aware that people who knew about Jaime's death felt uncomfortable around me, like I had a contagious disease, and they were afraid of doing or saying something to cause me pain. Let me assure you that I was already in more pain than you can imagine. You couldn't make it any worse -- unless you tried to ignore or avoid it.About 5 years after Jaime's death, I began to smile again and really mean it. It would be almost 10 years before I would hear myself laugh -- not a tears-running-down-your-face, pee-running-down-your-leg laugh like Jaime could provoke, but it was a laugh. And it was such a strange sound coming from me after so long that it actually startled me!Ten years out and I can finally tell Jaime's story without sobbing ... at least some of the time. I don't think it will get much better, but I will not stop talking about how her use of tanning beds took her life at 29 because the killing has got to stop. Melanoma is a cancer that, in many cases, can be prevented ... and it must be prevented. I have a mission. I did not choose it but I have it. Some of the time I don't even like it but I have it. And I will continue on that mission until that little voice in my ear leads me in a different direction.

Ten years out ... and I can't tell you everything is fine or back to normal (whatever that is) or that the road of grief is behind me. I still find it hard to imagine that she is really dead. But I can tell you that, even after 10 years, Jaime hasn't left my heart or my side. I may be in free fall, but she is right there with me. That I do know.

Friday, January 6, 2017

When my 29-year-old daughter Jaime died from melanoma (caused by her tanning bed habit), people told me to watch for signs from her. I was skeptical, as I'm sure that many of you reading this are, but in the almost 10 years since her death, I have seen enough to make me a believer. At some point, you don't question -- you just listen when angels speak!

I'm not sure when I stopped trying to logically explain unusual events and just accepted that my Jaime was the responsible party. Perhaps it was when I put a bouquet of flowers in the vase of her headstone. Yes, I did notice that there was one white carnation in it, and yes, I did know that Jaime hated carnations, but I didn't think it would matter. The next day when we returned to her grave, the flower arrangement was untouched ... except that the white carnation was lying on the ground and had been flattened.

Or perhaps it was when her dad and I and her brother Tim were sitting in our backyard, and we were joined by hundreds of beautiful butterflies. Or maybe it was when I was filming a PSA about Jaime and the dangers of tanning when a strange tapping on the glass behind me stopped everything, which turned out to be a dog that wasn't even supposed to be there. Or could it have been when our front yard was covered with little white feathers and the neighbors' yards had none?

And the list goes on and on and on ...

Most recently, my husband and I were visiting Las Vegas and were in a hotel lobby. Now before going any further with this story, I need to give you some background. Jaime had a little blonde chihuahua named Peanut. She had rescued Peanut from a puppy mill, and they adored each other.

Okay, back to my story! Into the lobby walks a young couple with a little blonde chihuahua prancing along on a leash. The instant the puppy spotted me she dropped to her belly and scooted across the lobby floor until she reached my feet, never losing eye contact with me. She then stopped and just looked up at me. The young couple was baffled by their dog's behavior, saying that she had never done this before. I leaned over and petted her head ... and then poof, the magic was over. She just got up and trotted away without looking back. I knew what was happening and so did my husband, and we could only smile at each other and softly whisper "Jaime."

Now perhaps you are thinking that this was just some bizarre dog behavior and had nothing to do with a sign from beyond, and I get that. But in the past 10 years, bizarre events seems to be attracted to me, so I know that little puppy was delivering a message from my very special angel ... that she was thinking of me and loved me and that there was no way I was going to do Vegas without her!

Tuesday, May 24, 2016

As soon as my husband and I stepped foot off the plane from Dallas at Newark New Jersey Airport, I knew I was in trouble. My eyes began that now familiar feeling of a waterfall starting to cascade down over my cheeks.This was the first time I had been to New Jersey in 10 years ... and the first I had ever been there without my best friend and precious daughter Jaime, who died at age 29 after a 9-year battle with melanoma. So many times I had walked through that terminal shadowing our princess and pulling our bags ... but not this time.What had I gotten myself into when I agreed to speak at the AIM at Melanoma/Atlantic Health System patient symposium in Morristown? Why didn't

I think about it for longer than 2 seconds when Dr. Eric Whitman, Jaime's melanoma specialist for 5 years, asked me to tell Jaime's story and update the audience on the ongoing battle with the indoor tanning industry? Really ... what was I thinking???Well, I did have a few moments of being a blubbering idiot, but then I felt Jaime's presence and the love that everyone there still had for her and I knew that I belonged there. It had been 10 years but Jaime had not been forgotten, and I realized that even though she couldn't speak herself, she was speaking through me (although I did censor some of her more favorite 4-letter words!).So even though public speaking is not really my thing, I put on my big girl panties and did what I was asked to do ... what I needed to do ... and that was to spread awareness about the dangers of tanning bed use so that maybe ... just maybe ... someone would be spared from losing their Jaime.

I entered into this as a rookie. I had not attended a patient symposium before and frankly thought they sounded stuffy, with a lot of technical/medical terms that I might recognize but certainly couldn't understand. After all, I had failed my college biochemistry course so it doesn't take much to put me into anxiety mode!To my surprise, the doctors who presented (Dr. Whitman and Dr. Bickenbach) brought the information down to a layman's level, and I was totally fascinated with what I heard. As I mentioned, Dr. Whitman was Jaime's wonderful melanoma specialist and now Director of the Atlantic Melanoma Center and the Carol G. Simon Cancer Center at Morristown NJ Medical Center. Dr. Bickenbach is a surgical oncologist there and the new (really cute!) kid on the block. You need to remember his name because I'm pretty sure you will be hearing lots more about him in the future.But my main take-home point (term I learned from the symposium!) was that the auditorium was just bursting with love and compassion and hope. My first thought was that it wasn't just a symposium ... it was a giant hug.The doctors were both very approachable and made everyone feel comfortable and welcome. The patient panel told stories of their difficult roads to survival, and all showed such gratitude and admiration for the two amazing doctors who had helped them along the way.I know, I know ... it all sounds so warm and fuzzy. Well, it was! And in the world of melanoma, warm and fuzzy just doesn't come along that often, so it was most welcome.So as I reflect back over my trepidation upon our arrival in New Jersey, I realize that I needed that giant hug ... to be around people who understood what Jaime had gone through, people who had loved and cared for her so many years ago, people who wanted to hear the message about melanoma prevention by staying out of tanning beds.Thank you, Dr. Whitman, for asking me (and Jaime) to be part of such a wonderful event ... and thank you, sweet Jaime, for being by my side the whole time.

It was also an educational year, concentrating our efforts on the connections between indoor tanning and colleges/universities. Too many colleges are making it much too convenient for their students to participate in the dangerous behavior of using tanning beds. Do they not care about the health and safety of their students? Or are college administrators unaware of the dangers of tanning beds? Or is this part of the plan to lure students and their money?

I think I learned more than I really wanted to know about colleges and their administration, about off-campus housing and their management, about people. I think I prefer being naive, but there's no going back now. Emails were sent out to over 300 college presidents on the topic of their university's connection with indoor tanning ... actually they were sent twice because of lack of response. It became apparent that most presidents do not know whether their institutions have a connection with the tanning industry ... but in truth, almost all of them do.We found that these connections might occur through the Dept of Housing, with partnerships/affiliations with off-campus housing offering tanning beds free to the students or working through third-party housing location companies that advertise off-campus facilities that include tanning beds among their amenities on the university's web sites.

Or indoor tanning connections might be seen through the Athletic Dept, with sponsorships by tanning salons or advertising at games or in event programs often arranged by third-party marketing companies. Some tanning salons claim to be the "official" tanning salon for the cheer teams of various colleges. The University of Louisville has a notorious connection with the tanning industry according to this article!The Finance Office might provide a link to tanning by providing student cash cards that can be used to pay for tanning services at participating tanning salons. Grand Valley State University in Michigan claimed that they would continue to allow
tanning salons to participate in their cash card program because it
would be breaking the law to not do so. I never received a copy of that law from them even after asking several times.The Student Government Association is another route that permits indoor tanning to connect with college students, raising funds by offering a student ID discount program and allowing local tanning salons to participate.The student newspapers of many colleges are not supervised or regulated by the university so articles promoting the use of tanning beds or advertising by tanning salons can and do appear as well. That's an area we will be concentrating on next.Most colleges, at least the larger ones, have some connections to tanning. Some even house tanning beds on their campuses, and it is becoming more common for them to be in their dorms! See this article about the direction student housing is headed. Colleges have become large businesses first, institutions of higher learning second ... or so it appears to me.

For example (just one of many), through conversations with various officials at Purdue University, I learned that the tanning salon located on their campus isn't technically (according to them) on their campus. That block of retail on the edge of their campus is owned by the Purdue Research Foundation, which I was told had no connection to Purdue University. Yet the President of Purdue is the Chairman of the Board of the research foundation ... which seems like a pretty strong connection to me! Check out this article that reported this info about Purdue.At this point we have heard back from most of the colleges (after contacting them through multiple emails, Facebook posts and messages, and tweets). See our results in the Notes section of Pull the Plug's page in our Good, Bad, and Ugly list. But we are far from done with this issue! It appears that the FDA will be putting a ban on using tanning beds on those kids younger than 18, but that still leaves those young people 18-21 vulnerable. Their lives deserve to be protected, too! So on to 2016 ...

Sunday, December 20, 2015

Last Friday was just a normal Friday ... or as normal as the Friday before Christmas could be ... until I received a notice from the FDA of a HUGE, earth-shattering announcement. They were proposing a ban against tanning bed use for all minors under 18 in the US! I had heard through the grapevine that this ban was coming, but I didn't know when. And I wasn't holding my breath because I'd been holding it for too many years already. Then suddenly, last Friday became AMAZING! The planets had aligned!!

It was almost 6 years ago that presentations were made at a FDA hearing on the issue of teens and tanning beds. One of my friends from the melanoma community gave this presentation that included Jaime's story.

Her presentation was one of many that shared stories about how tanning beds had changed or destroyed young lives. The hearings seemed promising ... but then the waiting game began. If you know me, you know that I am not a patient person, so ...In the meantime, my attention turned to state legislation when Texas introduced a bill to restrict children under 16 from using tanning beds. Even though it wasn't the under-18 bill that I was dreaming of (and many thought it was just a foolish pipe dream!), it was a step in the right direction. With help from Jaime's story, it passed, which was surprising for such a conservative state. (And eventually, a full under-18 tanning bed ban would pass as well!)Others began to share my seemingly impossible dream of an under-18 ban in every state. I'm not sure I even really believed that it was possible ... but I was being pushed ahead by some energy and force that insisted I just keep going. (Thank you, Miss J!) Then along came AIM at Melanoma, working on an under 18 tan ban in California, and I was hooked! Although it was far from easy, it passed! Twelve other states would follow to pass under-18 tan ban laws, but for years many more tried and failed. I am proud, along with Jaime and many, many others, to have been part of most of these difficult battles, but my dream was that all 50 states would pass these laws to protect their children by keeping them out of tanning beds ... and there was a long way to go.Then just as my energy was draining and my dream was dimming, last year the FDA renewed its focus on under-18 use of tanning beds. It announced a strong recommendation against the use of UV devices by all minors. Many of us thanked them, but also let them know that it just wasn't enough.And that led to Friday's announcement. Now there will be a 90-day period to respond to their proposal, and assuming it will be adopted ... that will put it becoming official just about on the 9th anniversary of Jaime's death!The stories of all the melanoma victims whose cancer was brought on by tanning bed use have been heard, including my Jaime's. The years of hard work by thousands of supporters for this teen tan ban are FINALLY bearing fruit. Many lives will be saved!! I am proud to have played a role in this, and my sincere thanks go out to everyone who contributed to making this happen, to those who dared to dream.

But wait ... we're not done yet with the indoor tanning industry! Visit and "like" our Facebook group Pull the Plug on Tanning Beds to keep updated regarding our continuing efforts. Now that we have seen the impossible become possible, there is no dream too big!!

Thursday, July 16, 2015

It is past time for a blog from me. I can feel it as if the page is nudging me. No problem, I think. Most of my blogs tend to write themselves. But now I put my fingers on the keyboard and get nothing. They just don't move.I recognize this fog of grief. I don't want to but I do ... and I know it will take a while for it to lift and allow me to focus. You see, my mom died last week. Yes, she was almost 96 years old; yes, she had no idea who I was for the past 2 years; yes, her quality of life was nonexistent. Yes, it was time for her to go ... but the loss still hurts.

This foggy feeling is all too familiar from when my 29-year-old daughter Jaime died 8 years ago (although it seems like yesterday). Jaime was young with her whole life ahead of her, she suffered
courageously for 5 years with end-stage melanoma, and she was fully
aware that she was dying. It's not the same ... and yet it is.Because here we are again ... left behind with the intense emptiness, the
conflicting memories, the messiness of dealing with death, the missing link from our
family chain. Another piece of my life, my past, my youth has been ripped from my grasp (see my blog There Goes Another Little Piece of My Life).I know I am not alone in these feelings. Many loved my mom and are affected by her death. Not only our close family and friends, but over almost a century she touched a lot of people. My heart aches for their loss as well as mine.

Matter of fact, I'm sure everyone reading this has experienced grief, and we all deal with it in different ways ... but we all must deal with it. It can't be avoided ... it can't be ignored. We grieve because we have loved.Death is part of life, but as part of the melanoma community, I see death visiting our group way too often. I see their pain, I know their pain, I feel their pain ... but it is their pain. Now this is mine once again ... and I don't like it.This treasured photo is from around 1979. Three generations: my mom,
my daughter Jaime, and me! There were three of us then, but now I am the only
one left. The two most important women in my life are now gone. It
wasn't supposed to be like this ... it is not the way I planned it.My life has been changed once again, and I don't like change. I am angry that I am once again forced to walk this path of mourning. I don't want to because I know what lies ahead on this long journey, but I also am aware that I have no choice. The good thing is that I know I can do it ... and so I will.But right now, I am fragile, not broken, just fragile. My thoughts are scattered and don't want to leap onto a blog page. My fingers don't want to move, and my brain is resisting every effort to find the right words.So I ask that you be patient as the fog clears because I have lots of future blogs to write ... I just have to find them ... and me ... again.

Rest in peace now, Mildred Jane Fox Helm (Sept 26, 1919 - July 7, 2015) ... Mother, Nama, Jane, Millie, or Blondie. You will be always be loved and missed by many! Thank you for giving us 95 years ... and forgive me for my selfishness in wishing there were more! I love you, Mom!!